Likely going to be told I have Functional Neurological Disorder

A hug to all of you experiencing neurological illnesses. They are tough and unpredictable.

I try to follow Swank / Overcoming MS type diets where possible and when I combine these with intermittent fasting it helps my symptoms a lot. Stress is an issue with neurological issues for me so I try my best to minimise stress to stay well. OP it's really worth experimenting with dietary changes like cutting out gluten and/ or dairy to see if they help. They can have a really profound effect.

I think you have jumped down the throat of someone trying to be kind and positive. It is better to have a diagnosis like FND with more hope that you have the power to help yourself in the long term with lifestyle etc and that things are more likely to improve than with a chronic degenerative neurological condition.

As an M.S sufferer myself I also had an optical neuritis episode, SOOO bloody painful, thankfully, eventually, I got a good amount of my sight back.

Currently been diagnosed with Chronic Kidney Disease, something else M.S has caused, fuckety fuck. The fatigue and pain is an everyday occurrence currently, my neurologist doesn’t believe in IV steroids for relapse recovery, thanks a lot you wanker!

The relapses are shite, I struggle along with a lovely husband that’s there for me. Currently stressed due to 29 year old daughter diagnosed with FND, I have mentioned it on this thread. Life deals lemons, so we have to make lemonade sometimes, but it’s a fucking hard existence grieving for a life you once had.

My daughter has a chance hopefully of recovery with therapies that are lined up, I really do hope so. This disease is nibbling away at me, and I lose a little bit more of me each year. My gorgeous hubby has said if I ever need a kidney transplant he’s up for giving me one of his, if it’s a match. I’m hoping it won’t come to that.

Your post encapsulated just how WE M.S sufferers feel, it’s such a vile disease and very misunderstood by many people.

Don't accept anyone telling you anything about FND being psychological etc. and to just relax. Psychological therapy is one part of it in the sense of treatment, but I am highlighting the danger of people suggesting 'imagination'.

There is not enough research or understanding, however, please do not hide your condition if you are diagnosed. There are so many people being diagnosed with FND now and there are groups to join on social media and charities such as FND hope. I describe it to my mum who has FND as a problem with the wires sending the signals, not the hardwire. The messages between the nerves and the brain are all wrong.

Your symptoms are real. You are experiencing this, and don't back down. People who tell you are lucky it is functional do not help either. It certainly doesn't feel lucky to not be in control.

You are doing great and know there is help out there. Push for neuro specific therapy if you are diagnosed, and not standard community or inpatient rehab, the understanding and quality of treatment in my region has an outstanding difference between the two due to knowledge and training.

I have seen people recover, and adjust their lifestyle to ensure they do not trigger symptoms. My mum is not yet one of those people :(

Tilly. My ds has other symptoms as well. He has completely lost feeling in one limb, has a tremor, has weird feelings etc. he is also autistic so does live with some constant underlying level of hyper awareness.

Don't accept FND if you think it's something else and fight.

But if it turns out it is FND after ruling out other things it's still real and please don't think people will dismiss the symptoms and your suffering.

This has been the way my FND is being managed. It is helping give me my life back. It hasn't cured me completely and I still am somewhat disabled by it though I'm able to do more and more.

mine presents as dystonia, ever since an adverse reaction to an antipsychotic I was put on 20 years ago. Physio has been a lifeline and also joining FND groups online.

Also, learn how sugar free drinks that contain sweeteners effect the brain, remove that from your diet if you’re eating or drinking it

I was getting neurological symptoms from msg and was eating it daily without realising. My symptoms were sudden muscle weakness, pins and needles, numbness, was terrifying.

Have a look out for things like that, something innocuous can cause neurological problems. It could also be a b12 deficiency. Speak to doctor and try to relax 💖

I don’t have much advice OP but I really feel for you and I hope you can get both answers and some effective help very soon. I think genetic testing is worth asking about again, if you have not already had it, but I really just wanted to share that a neurologist told me how symptoms can be complicated by a secondary Adrenalin rush. So you experience a symptom and due to the stress it causes you an Adrenalin rush occurs with all its own symptoms. So just because your symptoms worsen when stressed doesn’t necessarily mean they are caused by stress in the first place, it may just be that it is amplifying them if you know what I mean. So sorry you are suffering.

Wow, so first of all, I’m sorry you’re dealing with all of this. I completely understand the frustration of wanting answers but feeling terrified of what those answers might be. The waiting game, not knowing what’s going on but feeling like something’s off, is so draining. I really get what you mean about your body feeling like it’s falling apart and not knowing why. It’s like your own body is betraying you, and there’s nothing you can do to stop it. That’s an incredibly overwhelming place to be.

Honestly, it’s a relief that your MRI came back clear because I know how terrifying it can be to think something major might be wrong structurally. But at the same time, not having that definitive answer just leaves you in limbo, which is tough. I can’t even imagine how frustrating it must be to think your symptoms might be labeled as “functional” just because they started when you were stressed. It’s like, you’re already dealing with all these symptoms, and then you have to contend with that added layer of doubt, asking yourself, “Am I crazy?” It’s so much to carry.

I totally get where you’re coming from though. I was diagnosed with MS three years ago, and while it’s a diagnosis nobody wants, it was kind of a relief to finally have an explanation after years of random, weird symptoms that no one could figure out. Even so, it was a rollercoaster of emotions. I had my first major relapse (which I tried to ignore and wrote off as stress) and got over it in about three months. But then, about six months later, I became permanently legally blind in left eye, which was not supposed to happen—because apparently most people with optic neuritis get most of their vision back. But, well, I guess I’m just super unlucky.

And now, on top of all that, I’m going through withdrawal from high-dose IV steroids as my most ecent MRI showed a few new lesions so right now I’m in this weird place where I just want to pass out from exhaustion and punch someone in frustration but even with everything going on, I try to remind myself that life goes on. Some days are harder than others, but feeling low or hopeless in the moment doesn’t mean it’ll always be like this.

Also, ironically, the condition I did turn out to have was thought to be psychological before the advent of nerve conduction tests.

My gp was very clear with me that I'd face a lot of hurdles but his memo about how in the past seeing epileptic seizures as being faked before they understood what they were really resonated with me.

I don't have to justify myself to anyone thankfully, the people closest to me know.

Such as?

Be careful of diagnosing yourself pre emptively. I did that with FND, and didn't seek help. It turned out to be something completely different, that would have been cureable if caught earlier.

Oh yeah.

You can read research articles from the 1960s saying that MS wasn't a real disease and all the people who had it were pretending to be sick for the attention.

My daughter has a diagnosis of FND, it was last year that she saw the neurologist. Unfortunately we’re not in their catchment area for treatment so I have been searching desperately for help. I have M.S and the way it affects her is very similar, I paid for her to see one of my neurologists to rule out M.S or confirm she has it.

She has had gynaecology problems since she was 14, at the age of 21 and sick of getting nowhere we paid for her to have a laparoscopy, which discovered stage 4 endometriosis and other gynae complications, it’s been awful. She has had so much negativity over the years especially in the work place and school in particular with time off due to horrific period problems. Anyways swipe to now and we are paying for a psychiatrist, she has been diagnosed with Complex PTSD due to her trauma with gynae, one consultant in particular playing God.

Her psychiatrist has recommended EMDR, this has been difficult to find within the NHS, but I’ve managed it, and we are currently paying for her to see a psychotherapist which is comforting for her. She also has a brain tumour, the same as Davina McCall, currently being monitored but nearly the same size as Davinas, so an operation is imminent (found on MRI when looking for any M.S lesions). Her neuro surgeon diagnosed FND, and told her not to listen to people that say it’s all in your head, it isn’t it’s very fucking real!!

The way it’s been explained to us is that it’s a software issue, your body simply can’t cope with any more, it’s literally put the brakes on and stopped her in her tracks at the age of 29. She has been in fight or flight mode for many years and the body can only take so much, it’s now thrown it’s teddy out of the pram.

With you being in London it’s highly likely that there are hospitals close by that have a multi faceted team specialising in FND. I listened to Prof Stone on a Jeremy Vine show last year, look him up there’s all sorts of information on his site. Also EMDR is a really good, look up the information on this link, it’s brilliant

https://drarielleschwartz.com/emdr-therapy-for-complex-ptsd-dr-arielle-schwartz/

I really do hope you get the treatment you deserve, FND is a bizarre condition and it just shows how connected the body and mind are. Take care, I genuinely hope that you get the help that everyone with this rotten condition deserves 🤗

P.S my gp said to me upon diagnosis that they used to think epilepsy was nental instabilty/folk faking too.

My mum just sent this link to me, hi mum 😘 I too have FND. Sudden onset Jan 2021, no neurologist despitr urgent referral til Jan 2023, "it's vestibular migraines". Ye fucking what, 24/7 for two years, aye OK.

Spire healthcare £300, diagnosis within 45 mins.

One of my biggest issues is functional gait disorder, saw a fucking useless nhs physio in 2023 who was OBSESSED with my hypermobile knees, that I'd never noticed or caused issues, he called the day after diagnosis "oh I wouldn't say you have fnd, normally they pretend they can't do tasks we've seen them do before". Absolute CUNT.

My gp fortunately re-referred me for physio and I got a proper old persons let's get ya fit to go home physio, she knew everything about fnd and really challenged me, pointing out my strengths and weaknesses, identified totally where I've put in place certain movements or placements of my body to just feel safe.

I was knocked back for cbt, the recommended therapy as I'm mentally too well. Thank fuck I am cause I'd be dead by now otherwise.

Best of luck pal

@myplace

Thank you that's an interesting way to think about it.

I'm learning more from this thread than anywhere else!

(My hardware is as fixed as it can be, but nobody looking at my foot would say it was normal!)

Hello OP.

I am so sorry to hear you are going through this. I went through something very similar this year.

It started with tingling, then my skin felt like it was burning, then numb patches on my legs, twitches. When I lost control of my bladder I was rushed to hospital. They took it very seriously and suspected MS at first, but my MRI's and nerve conduction tests were normal. They kept me in for 4 days and ran all sorts of tests - nothing was found, just slightly raised liver enzymes which could have been something simple.

I was discharged and paid for a private neurologist, who also couldn't find anything wrong with me. My symptoms have improved somewhat but are still there.

I KNOW there must be something going on. It all started 3 months post partum - maybe it was triggered? But I still have no answers and a doctor also mentioned functional neurological disorder.

I'm going to see an endocrinologist next as I'm ruling out all options before I accept that diagnosis. Feel free to message me.

@Octavia64 re the software hardware issue, as I understand sometimes the software doesn’t accept the hardware has been fixed.

I have fibro which has similar issues. After any injury, I took ages to recover if at all. My brain was trapped in a trauma response, over reactive, over defensive, and convinced I needed to stay still and stop doing all the damaging things.

A physio taught me how to move the various areas incrementally, stopping before anything hurt, building up the movement, until my brain accepted that it was a safe movement. When I’m tired and stressed my brain throws up an error code out of a selection it’s had good practice with, and sirens go off about the pain in my left foot/right rib/small of my back etc. There’s no damage there anymore. Just the memory of pain that my brain uses to tell me to slow down and look after myself better.

At least, that’s how I understand it.

That actually sounds like B12 deficiency.